Yes, these papers prove that gluten intolerace actually caused fasciculations amongs with other symptoms that worsened over years (an extreme case was that guy with ALS-mimic who turned out to have celial disease).Though it is surely not case for everyone, disregarding this possible cause is really stupid.

GLUTEN = Worst imaginable flare up possible for me. It permanently revs my symptoms up worse than they were before and it is singlehandedly responsible for taking my occasional arms/shoulder/forearm twitching and literally overnight turning them into twitching every few seconds months ago & it has persisted like this ever since and I doubt it will ever get better.

GLUTEN = EVIL

I avoid it like the plague.

Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...

seventhcandle - I am not sure I understand. You ate some gluten and now you are permanently twitching all the time for months on end, or if you eat gluten you go through a phase where you twitch more and then it settles down?

seventhcandle wrote:GLUTEN = Worst imaginable flare up possible for me. It permanently revs my symptoms up worse than they were before and it is singlehandedly responsible for taking my occasional arms/shoulder/forearm twitching and literally overnight turning them into twitching every few seconds months ago & it has persisted like this ever since and I doubt it will ever get better.

GLUTEN = EVIL

I avoid it like the plague.

Hey good to see a post from you again! How have u been???

"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948

muppetdog wrote:seventhcandle - I am not sure I understand. You ate some gluten and now you are permanently twitching all the time for months on end, or if you eat gluten you go through a phase where you twitch more and then it settles down?

Sevenths (because he may not pop back in here for awhile) was hands down, the worst symptom guy I spoke to on here. Symptoms so severe I believe he was sleeping on the hard floor with his limbs pinned down with heavy objects and his head braced in place just to stop the jerking, etc. He and I PM'd for quite some time as I was exploring dietary changes, and had not yet figured out the trigger foods for myself. But he would try things, and have noticeable worsening of BFS symptoms with many foods. And just like the rest of us here who actually did the lifestyle/dietary changes *correctly* , it required a complete overhaul of our entire food intake for extended periods of time. He had whiddled his food intake to only certain foods which did not trigger worsening symptoms.

And that is the key. You don't just "avoid bread for a few weeks", or "cut out sugar" for awhile, with a nice big subway sandwich cheat day somewhere in the middle. Whether symptoms were severe or more mild, when we paid attention, we all noticed that symptoms picked up a bit a little while after certain meals. It wasn't difficult to realize there was a cause and effect. And it required major dietary, stress, and physical exercise changes that remained consistent for months. I was not aware that he had identified Gluten as a major contributor to his BFS symptoms, but I am not the slightest bit surprised.

As for it never getting better, please be aware of this: gut damage takes several months to a years, to heal. But it can heal. There are also other methods you can use, both natural (and pharmaceutical now) which address Leaky Gut Syndrome. In the last year pharma has come out with some things. Assuming Leaky Gut / Gut permeability / Gluten Sensitivities / God knows what is playing a role in this, time can heal it. I would look into Bone Broth on a daily basis for a significant amount of time. In fact I will PM you just to make sure you see this. You can google Bone Broth and Leaky Gut to see how it plays an integral role in actually improving damaged gut barrier issues.

I've posted on this supplement before but will take an opportunity to do so again. One of the leading causes for leaky gut syndrome is candida overgrowth. Candida can be very difficult to get rid of because it lives in colonies and is usually protected by a biofilm so that anti-fungals like garlic and fish oil cannot kill it. Starving it of sugar is very time consuming. The supplement my acupuncturist started me on was called InterFase Plus by Klaire Labs. It's basically a digestive enzyme supplement that helps break down the biofilm protecting the candida and greatly speeds up leaky gut recovery time.

For regularly dietary maintenance my acupuncturist has me take Lauricidin, which is a great anti bacterial, anti fungal, and anti viral dietary supplement. Besides helping me keep candida in check I have also noticed the benefit of colds and other bugs that periodically come up not lasting anywhere near as long as they used to. Anyway, since we're talking about leaky gut again I figured I would chime in with these helpful supplements.

If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.

I take garlic supplements, a probiotic, and a yeast-based probiotic to keep any candida in check. I wondered if it was the candida that was causing the twitching or the gluten, and for me personally it was the gluten. When I was on a juice cleanse (which is fruit based and probably not good for candida) I noticed I was TWITCH FREE, so that leads me to further believe it must be my diet and was likely the gluten. I had a really crappy weekend, diet-wise and hence twitch wise. I ate fried chicken, and a bite or two of pancakes and french toast. Today is a new day, and I am on day one of another juice cleanse. I highly recommend it to anyone who is serious about losing weight and feeling better, but if candida is the culprit for you then it may not be a great idea because it is after all juice, and candida thrives on sugar.

I have learned thru my own experience if you have celiacs or even gluten intolerance you cannot break the rules for a cookie here or a snack there. If your body cannot handle gluten you need to avoid it at all costs which means making sure every single thing you eat not only doesn't contain gluten but also is prepared in a manner that avoids cross contamination with other gluten products.

example...you go out to eat and get french fries....gluten free right? wrong...they were cooked in the same fryer with breaded chicken breast.

is it extreme? yes.....if your issue is related to gluten and you do not avoid it at all costs you will never truly know because with gluten a little = whole lot.

if you do not believe me spend time on celiac or other gluten intolerant forums and you will see what I say is absolutely true based on many many many people's experiences over a long period of time.

Additionally if the gut is the root of the issue which i do believe plausible for many it take a very long time to repair. This isn't I tried the diet for 2 weeks and felt nothing. it takes years and you need to work with a MD who knows how to treat such conditions.

anyways just my 2cents

"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948

muppetdog wrote:Do you guys have a lot of gut problems when you eat wheat, or are you asymptomatic with gut issues? Just wondering.

I developed Irritable Bowel Syndrome at the age of 20 I believe. I was in college at the time. The symptoms always were worse when I was under a lot of stress with classwork and projects. I would say my whole life as far back as I can remember I always had a sensitive stomach and would get stomach aches and have other issues in response to foods where others seemed fine.

When I developed BFS I never put two and two together that my symptoms were being impacted by diet though because the things I was reacting to were in just about every meal I ate. I was never free of them long enough to really feel better on a consistent basis. The only correlation I was able to make was that stress and anxiety were making my symptoms worse. It wasn't until the dietary factor was pointed out to me and I started experimenting with it that I realized just how much of an influence it was having as well. I started out in denial though because not only did I not believe diet was a factor, but I didn't want it to be either. Foods are a comfort to us and well, if you take that away when we're already feeling down? Man was it depressing at first. The only offset to that depressing realization was the fact that I was feeling better when I ate the right stuff.

Somebody earlier said that you have to behave yourself all the time, and that is true. A little gluten made my body react as though I had eaten a LOT. I quickly realized that cheating was doing me much more harm than good. I was really just cheating myself. With the right help though, you don't need to be on a special diet for years though. I was fumbling my way through it and I only had to stick to it for 6 or 7 months. I think with the right help from the get-go, you could knock that down to 3 or 4 months. The body is amazing at healing when you remove the obstacles out of its way.

If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.

muppetdog wrote:seventhcandle - I am not sure I understand. You ate some gluten and now you are permanently twitching all the time for months on end, or if you eat gluten you go through a phase where you twitch more and then it settles down?

Sorry for the delayed response. What happens is after I eat an offending food (it's not just gluten, but tomato sauce, certain spices, sugars, etc.), I experience an almost immediate flareup in overall twitching. Places that normally don't noticeably twitch will suddenly go into twitching overdrive, the first sign something is wrong. For instance, let's say the left side of my neck only twitches noticeably once an hour. Well, after eating gluten, it will start machine gun thumping away for hours on end. All of the other twiches in my body go into overdrive as well, and I'll feel twitching almost continuously. I am guaranteed at least one completely sleepless night, as my sleep jerks also come back full force for one night. My flareups after 18 months of BFS are not as bad as they used to be, but still pretty severe. Gluten, however, gives me the absolute worst flareups and brings me back to the horrific days of last year where I'll have a week of misery and no sleeping for several days, so I avoid it altogether.

The flareup is temporary, but I notice after a flareup, my overall noticable twitching ramps up. My arms, shoulders, chest, and butt go as often as my calves now. I can see little flickers and storms of twitches in all my limbs just like in my calves.

So if BFS led me to a healthy diet, then so be it. I still HATE twitching, but I have accepted that without medication (which I still haven't tried) it will likely never go away.

By the way, all signs point to twitching as something that is continuously going on in everyone all the time in every muscle, just not necessarily on a noticeable level. Potassium channel dysfunction due to chronic sleep deprivation and anxiety seems to be the cause of ours increased level of detectable twitching (along with chronic hyperventilation). Maybe the food sensitivities are a result of our body telling us, "Don't eat that sh*t! Body can't handle it! Bad for you!"

People tell me these days I look younger and healthier than I ever did. I date, sing weekly at karaoke, am very successful in my career, and am really doing the best I have ever done in my life.

BFS stinks, but it got me to value every day.

Thank you for listening and aztwitchy, nice to see you and everyone else too!

Howard

Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...

That is awesome that you are doing so well on the new diet. It sounds like you are back in control of your life and it's even better that other people are even complementing you as looking younger and healthier. It's a sure sign you're on the right path. It sounds like you've been on an anti-inflammatory diet long enough that much of your system should have healed up by now. Unfortunately our immune systems can learn to target long term enemies and remember them, even when they really aren't supposed to be a threat (like gluten and tomatoes). I'd like to urge you to look into the acupuncture based allergy elimination techniques such as NAET (Nabudripod's Allergy Elimination Technique). There are others, but NAET is among the most popular. I assure you that they are the real deal and do work. The key is to remove the reason the allergy developed in the first place prior to treating it this way. Through the NAET procedure your immune system can be told to no longer target things that are not really a threat. Anyway, just a suggestion for you to look into. I was once like you and after I had eliminated gluten from my diet I could tell when I slipped up. My body told me so. The twitching would go from a very minimal and almost unnoticeable level and skyrocket into my worst nightmare whenever I would cheat. The night jerks would come back for at least one sleepless night, just as you said. After my acupuncture NAET treatment for gluten though guess what? I can once again eat it again and no twitches, no night jerks, no other symptoms. I still eat a much more balanced diet, less processed foods, more organic fruits and vegetables, more anti-biotic free, range free meats, etc. I indulge now and again, but like I said, much more balanced diet. I also take probiotics on a regular basis to help keep my gut healthy. The BFS has not returned and my life is normal again. My diet is normal again because my immune system is no longer targeting things that it should not target. I hope you consider looking into it. Thanks.

If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.

chicagobfs wrote:Today I got my results for celiac disease and I'm negative. Not sure what to think about it, should I still stay on gluten free diet? No idea!

Celiac is not the only condition. Its the most extreme, and easily tested. There is also "gluten intolerance" and a host of other causes of Gut Permeability. I have listed them several times in the past. including Antibiotics, NSAIDS, certain chemicals, and more. In testing for Celiac all you are doing is trying to determine if Celiac is the cause of your leaky gut problems. I am 100% certain I would test negative for Celiac. In fact I think everyone here who has seen results from diety changes would test negative for Celiac also.

In your case I would recommend avoiding all pastas, noodles, breads, caffeine, and alcohol for a solid 6 months. If you don't see an improvement, and you know for a fact that you did not "cheat" during this time on any of those ... then I don't see much point in continuing. Testing for Celiac was never the criteria for whether dietary changes should be implemented with BFS. I got my diet down to potatoes, veggies, and organic meats. That's what I eat now. And that is what it took (as well as 4 to 8 months) to resolve my BFS. Of course complete elimination of emotional stress, and proper exercise to reduce body stress levels is imperative.

There is a simple blood test you can take that checks you for antibodies against 96 of the most common foods that I had done back in 2010. Your doctor can order the kit from foodallergy.com and send you to a lab for the blood work. The lab takes the blood and sends it in. They send the results back to your doctor in a few days. It will tell you if you are gluten intolerant and how severe. I highly recommend it.

If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.